My speech for Sunday's Autism Conference

My struggle with Autism
By Jodie Fox

Hello, my name is Jodie Fox. I am 25 years old. When I was 20 years old, I was diagnosed with Pervasive Developmental Disorder, also known as PDD-NOS, which is on the Autism Spectrum. I am also diagnosed with Attention Deficit Disorder, Oppositional Defiant Disorder, and anxiety. I have struggled with my disabilities all my life, but I have always worked hard to overcome them.
Growing up with disabilities was very difficult for me. Although I was not diagnosed with Autism from a young age, the signs were there. Despite the fact that I was speaking at a slightly below average rate, by the age of two, I lost all of my language. By the time I was three, I barely spoke ten words. In addition to this, I walked late, learned to tie my shoes late, and so on and so forth. I would wander off, and not be able to tell someone who my parents were when they found me, because of my lack of language. The best example of this was when I was five years old. We had gone down to Disney World on a family vacation. We were in Epcot, and I had wandered off from my family. When one of the workers there asked me my parents’ name or even my name, I couldn’t even respond. It took them a half a day to finally find me.
School was very difficult for me from the beginning. I went to a special education pre-school, New Interdisciplinary School, where I was in a 6-1-1 class. After pre-school, I went to the Terryville Learning Center, a primary school for special education students. I was there up until the end of first grade, where I was transferred to public elementary school, still in special education. By the end of fifth grade, they had informed me that I was allowed to move my way up. Once I entered middle school, I was entered into an up and coming program. My school district, Longwood, was one of the first to use the program. The program is known as C.I.P, also known as Collaborative Inclusion Program. It is a step above special education, but a step below normal resource room. There are fifteen students in the program, and they all have the same resource teacher. This resource teacher not only goes to the four main classes with those students, Math, English, Science, and Social Studies, but collaborates with the teachers. I had this program up until twelfth grade, at which point I moved into regular resource room. While I did fairly well in my academics, I struggled making friends throughout school, probably partially due to my disabilities. However, during the summer, that was a different story.
The summers during my school years were some of the best summers of my life. I attended Roundlake Camp, part of the New Jersey “Y” Camps for five summers in the Poconos. It is a sleep-away camp for children with disabilities. There, I made many friends, had my first boyfriend, and made some memories that still stick even today. This camp was a great opportunity to let me socialize amongst others who were similar to me. Unlike high school, I never felt like it was hard to make friends, and I still speak to many of them today, almost ten years later.
From high school, I went to Suffolk County Community College, where I studied Theatrical arts. While there, I had tutoring to help me with graduating. I studied theater because performing is not only one of my favorite hobbies, it is also a great outlet to meeting new people, and gives me another opportunity to socialize. I have been performing since I was twelve years old, in Community Theater, camp, and college. I have been in over 20 productions on stage and backstage. I also have been playing clarinet and piano for numerous years.
While I attended Suffolk, I had heard of another program for college age kids with disabilities. This was also right around the time I was officially diagnosed with Pervasive Developmental Disorder. This program is known as the Introduction to Independence at New York Institute of Technology. I attended this summer program in 2004, and it taught me checking skills, job skills, independence skills, and social skills. It was also where I made some truly great friends. This program is a part of a larger program at the New York Institute of Technology, known as the Vocational Independence Program. The fall after I attended I to I, I started in the main program. I went there for three years, learning about independence skills, achieving and keeping a job through internships, math skills, such as working on my checkbook, and social skills. Although, they didn’t exactly work well for me. I struggled looking for a job for two years after leaving the school, and the only job I had was with a boss that did not work well with me. I ended up quitting before I could get fired.
The job world has been rather difficult for me. Although I achieved a job at a summer camp right out of high school, in the past few years, it has been slow. I have not only struggled finding a job, but keeping one as well. One of the main reasons for this is miscommunication. This comes from my diagnoses of both PDD and ODD. Sometimes from me not calling if I am running late, or hearing something wrong, or judging what the boss said as something else, it has always been a problem for me. Also, sometimes I would be oppositional, but not realize, then find out from my job coach later that the boss told them I was oppositional. But now I have found an outlet to help me with my issues in the workplace. I have recently been offered sheltered employment through Skill Unlimited. Sheltered employment means that I have a job coach there at all times, while I am asked to complete small tasks, while earning a little over minimum wage. The advantage to this job is the fact that I will have the job coach there at all times, instead of just working through VESID, where the job coach visits about once to twice a week. This will help me get back on track, and be able to go back out in the workplace in a year or so.
Another opportunity that had come out of the VIP program was the fact that I now live in my own apartment, instead of in my parent’s house. At the beginning, it was a struggle. I had a roommate for a year, and, well, I guess you can say that we get along better now that we’re not roommates. But now I live on my own, and although I am not paying my own rent or bills quite yet, it makes me feel independent. Now the only thing I have to work on is my tendencies to be a bit of a slob sometimes.
Throughout my life, I have had trouble speaking out. Not in terms of speaking in public, but speaking to professional help, like a psychiatrist or a social worker. I have been through numerous doctors, not for testing, but because I have always struggled talking about my issues with them. But recently, I have found a new outlet for venting out my problems. I have recently begun writing a blog, expressing all of my trial and tribulations of having disabilities. I think this is a great way to let my emotions out without being embarrassed by telling someone in person.
I also get help through a program known as Self determination through OMRDD. Self-determination is a method by which people with disabilities will be given the opportunity to achieve additional control and direction over the services that support them in community living. I am considered the center of support in the circle of consolidated supports. The staff who work with me include a Medicaid coordinator, a broker, family, and staff who work with me within my home and out in the community. However, this is another area in which I have struggled in. I have been through numerous staff members, ending up firing most of them due to my stubbornness. I guess you can say I am difficult to work with. I tend to argue a lot, and become quite stubborn at times. The only staff member that lasted a long time ended up having to leave because of other work complications. As of right now, I do not even have a staff member working for me, but we are working on that for me.
While I struggle in my life, I find little ways to get help and be motivated. As mentioned before, I love to perform on stage. I also enjoy writing now and then. My favorite things to write is Twilight fan fiction, which are basically stories written by the fans. I love to read, my favorite books are Harry Potter and Twilight. So in conclusion, while I am still struggling with my disabilities, I find ways to learn more about how to cope with it, and manage it in all aspects of my life.